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Lesley’s Story

The year 2007 heralded, we thought, a promising new start.

Early retirement for Mike. Our two children were through University. It was now our time, at last! We couldn’t wait!

Early spring and Mike woke me one morning to say that he had fallen backwards down the stairs. We joked about his clumsiness in slipping.

As the year progressed we realised that his mobility was being compromised by an increasing stiffness. Arthritis, we were told.

Minor personality changes were happening. Depression caused by early retirement was the next diagnosis.

Mobility worsened and following referral, a diagnosis of Parkinson’s Disease was made. Things were getting worse. The Consultant agreed. I was a registered nurse and I ventured the opinion that I thought Mike had PSP. He agreed, but then stated that other conditions had to be excluded as there was no diagnostic tool for PSP.

So we were sent on our way. Mike could not walk without a walking stick in one hand, and me holding his other arm. My life as his carer had begun.

A year later I retired, earlier than planned. Mike was having problems managing on his own when I was on duty.

Gradually our lives, our house, changed. We jokingly called it, ‘The Bide a While Rest Home’!

Strangers came in to assess our home, assistance bars, grab rails, a stair lift and disabled shower room fitted, wheelchair access built. Daily life seemed to be governed by appointments with all manner of healthcare professionals, either at home or at the hospital. It just didn’t feel like home anymore.

An electrically-adjustable bed was installed which necessitated separate sleeping arrangements, which we both hated. I had nowhere to warm my feet! Laughter still reigned.

The Botox injections were called, ‘the film star treatment’, which we said kept him looking young, despite a wheelchair making him feel old before his time.  I developed muscles, and a strength, I never realised I had, strength of body, mind and soul!  But, we were still a couple, man and wife, and in the summer of that year we celebrated our Ruby Wedding Anniversary with a garden party, but, even more importantly, with a renewal of our wedding vows in church.  Never had ‘till death us do part’ seem more poignant.

We went away for Christmas 2010 to our daughters.  It quickly became apparent that this would be the last time we would be able to go and stay.

The New Year brought unprepared for changes with Morphine patches, nasal prong oxygen, and an air mattress.  The bedroom sounded and looked, a little like a hospital ward. Gradually I felt that I was losing my identity. Nurse, not wife.

Increasing dysphasia required thickening of drinks and nutritious, pureed and easily digested foods. Mike refused a PEG, and then the next shock; he prepared an Advanced Care Planning document.  I felt alienated from him. I didn’t know who he was, who I was, anymore.

A stay in the local Hospice brought some relief for me. I had time to sit and hold hands with him again, and even time to play a practical joke! The laughter was still there! A precious respite in time.

Home again, with Mike confined to bed. Time was moving on at a fast pace.  Nurses every day, managing medications. Mike slept a great deal. I didn’t. I would sit with him at night when he was anxious. I had three to four hours of broken sleep a night. A caring zombie!

Then re-admission to the Hospice. I was able to sit and hold his hand again.

The struggle of living with PSP finally ended on 14 January 2012. The caring had ended.

Then began the struggle to rediscover who I was.

Maureen’s Story

Maureen Horne, from Harpenden, shares this honest account of caring for her late husband Gordon, who lived with PSP.

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Amy’s Story

Grandad had always been well spoken, articulate, very private and fiercely independent.

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Peter’s Story

Peter Grant, 81, cares for his wife Margaret, 78, who lives with PSP.

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